Examining the characteristics of children with spina bifida in a population-based surveillance system and a clinic-based patient registry Open Access

Anderson, Jaynia Angela (2014)

Permanent URL: https://etd.library.emory.edu/concern/etds/nk322d49p?locale=en
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Abstract

Background: Spina bifida substantially contributes to perinatal mortality and lifelong disability. Population-based surveillance systems monitor birth defect trends, risk factors, and effectiveness of prevention programs. Clinic-based patient registries provide data for advancing knowledge in the understanding of disease progression and management.

Methods:
Demographic and clinical characteristics were described for 3,685 children with spina bifida included in a population-based surveillance system and 1,598 children with spina bifida included in a clinic-based patient registry. The distributions of race/ethnicity among the two systems were compared with the respective underlying statewide and metropolitan area populations. The distributions of spina bifida subtypes by race/ethnicity were also described.

Results:
The race/ethnicity distributions of both systems were significantly different from their respective underlying populations, with an under-representation of NH black children. Most children in both systems had the myelomeningocele or related subtype and more than half had hydrocephalus. In both systems, the distribution of spina bifida subtype was similar among NH white and NH black children but different among Hispanic children.

Conclusions:
Population-basedsurveillance systems assist in quantitatively evaluating the burden of spina bifida in the population, and clinic-based patient registries are useful in understanding the clinical characteristics of spina bifida patients. Similar overall patterns are seen in both catchment systems and the two systems differ from the underlying populations. The population-based surveillance system differ because of the differing burden of disease across race/ethnicity groups; and the patient registry might differ because of issues related to access to care and utilization of care by different race/ethnicity groups. However, there was insufficient data available to determine the cause of the observed differences.


Table of Contents

Background/Literature Review…………………….….……………...…...…1
Introduction…………………………………………………..………….............17 Methods………………………………………………………………...........…..…19 Results………………………………………………………………………............23 Discussion……………………………………………………………………..........28 Conclusion……………………………………………………………………..........35 References…………………………………………………………........………….36 Tables…………………………………………………………….........….……...…44 Appendices..................................................................51

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